… MY SON: LIVING WITH HIS INVISIBLE ILLNESS

THE BEGINNING

After 14.5 hours of labor my

one and ONLY Prince was

born…

• * Zaharion Marcellus Johnson

• * 8 lbs. 5 oz.

• * 21 inches long

• * Healthy Bundle of Joy

T H E U N K N OW N B E G I N N I N G

I remember it like it was yesterday:

* Zarrieya’s cheerleading competition

• What should have been a 45 minute ride

home from Grand Rapids, MI, quickly

turned into 1 hour and 45 minutes

• * The only music to our ears was

Zaharion’s crying.

• * Nothing I did was soothing him

• * I rubbed his feet and his cheeks, I

showered him with kisses ALL while

trying to remain calm

• * LAST and most DANGEROUS choice: I

took him out of his car seat so that I

could nurse him, while my Mother was

driving on the highway.

• * In that moment, I would have done

anything to see his infectious smile, that I

had just saw 2 hours earlier.

WHEN THE CRYING STOPPED…• Home from Cheerleading Competition, Zaharion is still

crying. I had tried everything possible to soothe and nurture him.

– Every 10 minutes he would stop

• After about an hour, my Mommy took him to give me a moment to rejuvenate. Sitting on the couch across from her, she rocked him and kissed him…she rubbed his feet…the crying started again. Maybe he has to burb? She lifted him up against her chest and began patting his back. Within 2 minutes, he laid his head on her shoulder. That was my WARNING sign!

– Remember saying, “Mommy, something his wrong with him. He is NOT a shoulder baby. He cries every time anyone tries to lay his head on their shoulder. I know that he just stopped crying, but something isn’t right. “

– Mommy, “Your right, he is not a shoulder baby.”

– Me:, “Lets look at his face? He can’t be asleep that quick. Sit him up.”

• Just has she was lifting him off of her shoulder and turning him around, he let out this piercing cry and I remember hysterically screaming, “HIS EYES ARE ROLLING!! OMGOSH! LOOK AT HIS FIST! WHY IS HE JERKING! WHAT IS WRONG WITH MY BABY!

– Crying uncontrollably, I call

PANIC ROOM…PANIC ATTACK• Ambulance arrive within 10 minutes

– Seemed like 50 million of the same questions

– Remember thinking, “This is like the song that never ends.”

– Remember asking (while crying uncontrollably), “Why are you asking me the same questions I just answered? Didn’t dispatch relay the information? WAIT…what are you doing with my baby? STOP…your making him cry more. Now my daughter is crying? Couldn’t you have asked me to ask her to leave the room? She’s 8 for God’s sake!” STOOOPPPP!! *Another seizure begins*

• Blame game

– “It’s your fault he had another seizure!” Mommie, why are you so calm? Can’t we just drive him ourselves?” OMGosh…just give me my baby!” As the EMT says, “Mom, we know it’s easier said than done, but please stay as calm as you can because he…. *ANOTHER seizure* 2 minutes of post *ANOTHER seizure*

• Game of Silence

– After seeing these 3 seizures back to back, I remember standing in the middle of the living room, with a blank stare and my lips had stopped moving. My head was spinning…everything/one EXCEPT my son was a blur

– I hear the EMT’s say, “We have to get…” “Now.” “Mom, you can rii…” “Not the back..”

VS

– What they actually said, “We have to get him on the ambulance NOW! We can finish these questions later. Mom, you can ride in the ambulance but you’ll have to ride in the front, because we need to keep him stabilized.”

Step 3

They have to stabilize him as much as possible before

transporting him

“Screw this! Pick Toot up and drive him yourself”

Step 2

The EMT’s are simply following their procedures. Asking

questions is part of the process.

These people need to do less talking and more driving

Step 1

TRY to remain Calm RubontayYou absolutely CANNOT

remain cam

T H E E . R .

MOM ON FIRE…

RIDE ALONG

F I R S T I M P R E S S I O N S

• Smiles

• Greeted at the door

• AKNOWLEDGED

• More questions

• But this time was different

• Vitals. Chart.

Ask Mom. REPEAT

• Battle Creek Health

Systems could use

some tips

• Let me Introduce myself…

• VALIDATION

ADMITTED• In the next 24 hours, Zaharion will have

multiple test in order to determine the cause

of the seizures

– Hospital Social Worker will be around to talk to

you

– It’s common to not find anything the first time

so don’t be alarmed.

– Questions are normal so please don’t hesitate

to ask. Right now, it’s going to seem like a lot of

“I don’t knows” until he has completed all the

testing.

– Because he is only 4 months, some test may be

more challenging because he will have to go

with the nurses and he won’t smell your scent

• Is there a reason why I cannot go with my

son?

• Are you TELLING me or ASKING me?

• Home away from home

– “Mom, what formula does Zaharion

drink.”

• He is nursed

– We love it when Mom’s say they

nurse. Good for you Mom! And

because you nurse, you can order

room service up to 5 times each

day.

• Feeling of validation during

my mental chaos

D I S C H A R G E D A Y

THE NEXT 7 MONTHS• Seizures increased

• Still NO call from the Social Worker from January

• In and out of the E.R.

• Several EEG’s attempted but were unsuccessful

– Time of day of test

– How am I supposed to keep an infant awake all day until test

– How am I suppose to keep him calm when I’m told not to give him anything by mouth an

hour before

• Because that’s really going to happen

• Continuous calls to the Neurologist

– Overnight EEG FINALLY scheduled…for August 3rd…Toot’s 1st birthday

HAPPY 1ST BIRTHDAY TOOT!AUGUST 3, 2011

THE WAIT…

• The results can’t be taking this

long.

• Are they really that busy?

• THINKING: It’s been like 2 months

• ACTUALITY: 2.5 weeks, but my

mind kept telling me different

• By this time I am already

expecting worse. I simply felt in my

gut. I began to prepare myself for

the phone call.

• 3 weeks later and my caller ID

finally said Pediatric Neurology

No matter how much I prepared myself for this phone call…I still was NOT

prepared.

September 2011

O C T O B E R 2 0 1 1

* H I S B E H A V I O R I S E X T R E M E

- V E R Y A G G R E S S I V E

* F I R S T A P P O I N T M E N T S I N C E T E S T I N G A N D R E C E I V I N G T E S T R E S U L T S

- 6 – 10 seizures a month since having testing until now

- No environmental changes

- His behavior

- Is this common?

- Etc.

*CSHCS

- FIRST MENTIONED

- NO idea what it is

- What is it?

- Does he qualify?

- Maybe later

- Resource?

- Why hasn’t anyone ever mentioned this?

“Invisible” Social Worker that I NEVER heard from

*SSI

- Applied?

- A process = patience

N O V E M B E R 2 0 1 1

T H E J O U R N E Y A H E A D• Life hasn’t been the same since I received that FIRST phone call

telling me that Zaharion…my baby…has been diagnosed with

Epilepsy

• His behavior

• Life altering decisions

• I’ve question, blamed, and beat myself up

• I felt like I had failed as a Mother; his nurturer

• I felt like I was now neglecting my 8 year old daughter

• I still had NOT heard from the Social Worker so naturally, I began

to think “they” didn’t care; my son was just another “Epilepsy

Patient”

• Was I going to be prepared for the continuous doctor

appointments?

• Was I going to responsible?

• Was I prepare for the uncertainty?

• Was I going to learn to ASK for HELP?

Epilepsy and learning

Children with epilepsy have the same

range of intelligence and abilities as other

children. However, some children with

epilepsy will have learning difficulties.

This is usually due to a coexisting

condition, such as an underlying brain

abnormality, or it might be related to the

child’s frequent seizures.

Sometimes, medication is a contributing

factor as it may cause drowsiness or

hyperactivity. When a learning difficulty is

identified in a child, there are strategies

available – both medical and educational

– that can be implemented. Talk to your

epilepsy counsellor about any concerns

you might have.

Health Insurance?

LOST

&

OVERWHELMED

AS THE TURNS

Anemic

SOMETHING HAS GOT TO GIVE:THE SMILE TOOT USE TO WEAR

DETROIT CHILDREN’S HOSPITAL• Referred by his Neurologist in Kalamazoo to DCH

• Agrees that Zaharion has been “struggling” for a while

• Agrees that his brain is “unique”

• UPFRONT and HONEST

– Intensive testing

– The end result will either be brain surgery or the VNS once all testing is completed.

HEALTH INSURANCE DISAPPOINTMENT• Trying to set up transportation

– Local CSHCS at Health Department

• Can’t be arranged though them, must call United

Health Care

– United Health Care

• Can’t be arranged though us, must be arranged

through Medicaid

– Medicaid

• Can’t be arranged though us, must call United Health

Care and ask for CSHCS

– United Health Care

• CSHCS Department

– “I don’t know what you are referring too?

Please Hold…You have to call Medicaid”

– Medicaid

• Can’t be arranged though us, must call CSHCS

– ALREADY TRIED THAT

• Call back and ask for a Medical Social Worker

– United Health Care

• CSHCS

• Social Workers

– Someone will call you back tomorrow

– Local CSHCS at Health Department

• FORGET IT! I have spend 2 hours going back and forth. I am furious! I don’t want to be reimbursed for anything! I will pay for a hotel and my own mileage.”

• “SO SORRY! This is ridiculous! You are entitled to these benefits let me make some phone calls.”

2 hours vs 15 minutes

NO SUCCESS vs SUCCESS

Same questions

A CHRISTMAS TO REMEMBER

Ronald McDonald House

Children’s Hospital of Michigan: Detroit Medical Center

THE DOC IS IN• Test Results

– Not what they wanted

– Not what I wanted to hear = NOW WHAT?

– Such a waste of time

• New diagnosis

– Cortical Dysplasia

– EXCUSE ME? Am I being punked?

• Tell Ashton Kutcher He can come out now.

LOST

&

OVERWHELMED…AGAIN

WHERE ARE WE NOW

WE WEAR PURPLE FOR TOOTBrains are just as important as boobs

#November

#NationalEpilepsyAwarenessMonth

#BrainsMatterTOO

#DareTo…Get Educated

Keeping up w/ Toot

keepingupwithtoot@gmail.com